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Are there any good news regarding HIV issues lately?. I mean, every time I open poz.com, I seem to be sprayed with all of this bad news and new findings they have discovered on how HIV affects almost everything in our body; on how HIV meds, our only chance for survival, also may severely damage our organisms in the short or the long run; on how some HIV+ people have started to develop rare forms of cancer and tumors, due to a battered immune system, even if being on a HAART regime; kidney failure, liver failure, spleen and/or pancreas failure, bone problems, brain damage, cholesterol and triglicerides, HIV related diabetes, and the list goes on; also how HIV statistics have been showing a new increase, instead of a decrease, in some parts of the US and the world. I don't hear not even the slightest glimpse of hope on a near by cure and/or vaccine these days. Instead, the HIV has seemed to be gaining more strength according to researchers and the medical science. Our disappointing government doesn't offer a very nice face of hope either. So, every thing is bad, bad, bad, and nothing but bad news on HIV. Has anybody known of anything good?.

Maybe I am not seeing what you are, but I was going to ask if things always looked this bright in the HIV world as they seem to now. I am new to HIV life, infected in 10/08, but I was wondering if all the promising news and discoveries were just hopes and were always there, or things really have improved in the area of possible cures and treatments.

Proud, considering everything I have read and seen from years ago, it has come along way and moving forward all the time. New drugs like Isentress seem to show incredible promise and great reductions in side effects. As well as some promising possible cures out there that very well may be only a few years away. Who knows though?

Almost a year and a half after my diagnosis, including AIDS, I'm as healthy as ever. I think it's a good thing that researchers continue to identify HIV-related problems, so that they can come up with ways to prevent and alleviate them. Meds may cause long-term problems, but so far all they've done to me is bring my immune system back from the brink of disaster. I just added Isentress to my regimen yesterday and have hopes that it will improve my health even more. The red tape involving doctors, insurance, and ADAP that I have to deal with almost daily is frustrating, but there are worse fates....

A vaccine would be nice for the world at large but won't help me. I'm still hopeful that a cure can be developed though.

check out the research news forum. Some of the members are finding some exciting stuff. A lot more hopeful then in years past.

Ughh. Sorry, but that last bit is bull. You could look at any point in time in AIDS research over the last 20 years and find stories about promising potential treatments that would deliver the knock-out punch against HIV. Obviously, none of the previous ones have panned out, and most, if not all, of the current ones won't either (although we'd all love it if one of them did!).

Sadly, our research forum has become one big circle jerk of (badly) self-taught research "experts" for their list of future cures.

If I were you, I won't listen to any pessimist people.It's a waste of time.

No matter who is right in his/her answer, pessimist is a worst attitude than optimism.

And optimism allows you at least to go forward.

Among the others reasons why I believe optimism should preval, there are:

A discovery made today can be part of the cure we will find tomorrow. And disovery are made daily. Which one is THE discovery, no one knows, but each discovery deserve interest if you want.

I know couple of HIV people, with different profiles.

There are those who knows they are HIV+ and live their life as if they was HIV-, but still do there labs and see their doc, no more. They don't give more space to HIV than that.

And there are those who just after having done a lab worry for the next one.

At the end of the day, those who have been optimist about there condition are the most happy.The others leave in perpetual fear. In both case, what will happen will happen. Same with the research you may read. You may think, just another bullshit, or just tell you: maybe this one.

Something is however probably missing in the research against HIV:So many studies but no top organization above them, nor a master plan.

Studies are just made all around the world and that's it.Sure, big pharma have some master plan, but not necessary to find a cure.

Whatever people may think about them, we can at least be happy that these research are made, and so, be hopefull are cure will be find. Because if a day a cure will be found, we will have need these research to have been done. So many disease are forgetten in this world, but not HIV.We can count or blessing getting so many scientist trying to improve our condition. So why not read them, why not be optimist. I wouldn't if there was no research. Now there are research, so better to be optmist.

And about the drugs, the PRO 140 or the Apricitabine are also good news.

About the know how that some may have and other don't I think its a wrong debate.We are patients and no more. We can speak about personal experience or maybe provide reference to a study, or say what not to do but no more.Now, we are all different people, with different interest, and this forum need this diversity.

If all of us were thinking the same and talking the same, we won't be here.

Ughh. Sorry, but that last bit is bull. You could look at any point in time in AIDS research over the last 20 years and find stories about promising potential treatments that would deliver the knock-out punch against HIV. Obviously, none of the previous ones have panned out, and most, if not all, of the current ones won't either (although we'd all love it if one of them did!).

Sadly, our research forum has become one big circle jerk of (badly) self-taught research "experts" for their list of future cures.

Peter,Your absolutely right about the promising potential treatments of the past 20yrs and their dismal failures. Access to actual studies were more difficult and of course there will always be massaged data as in years past. What we all hope is that more oversight will be able to weed out the losers. Look at what is happening with CHAVI.CAVD,IAVI and the Gates foundation. For the first time, research is actually being shared for a common goal to find a vaccine and cure and that certainly is hopeful. With all eyes on those groups,I don't think they will make statements without dotting every I and crossing every T. Can anyone say their therapies will work absolutely? Of course not. But at least we don't seem to have the bickering going on as in years past.

I am somewhat disappointed in your statement that you feel the research forum is a "circle jerk". If you really feel that way, you,as the founder, could shut it down. However, it is a good thing to see poz people taking an interest in research. That should be encouraged.

I am somewhat disappointed in your statement that you feel the research forum is a "circle jerk". If you really feel that way, you,as the founder, could shut it down.

Sadly shutting that section down would simply cause certain people to engage in copypasta spamming of other sections of these forums. It's simply the nature of internet forums. You know, there's a reason that certain forum members had to even be given their own segregated sub-section in the Research forum. You'd think that would have sent a bit of a message, but no.

Peter, and I don't want to put words in his mouth, most likely wasn't applying his statement to everyone who posts in the Research section. But he's entirely correct in pointing out that the majority of current findings will go absolutely no where, and that anyone who has observed such things over the past 2 decades is well aware of this context. It's not an issue of pessimism or optimism, it's an issue of being reality-based. It's hard to diagnose an OCD disorder over the internet, but I tend to see some activity of that order and it's rather disturbing.

So, every thing is bad, bad, bad, and nothing but bad news on HIV. Has anybody known of anything good?.

Well I dunno but its bad news i seroconverted but hell better in 2008 then in 1998 or 1988 or 1978. Geez! Progress seems slow but no doctor has told me to put my affairs in order and plan my funeral. In fact the opposite. And look at those labs! I'd probably had been on a slab, cold and dead, already, without the decent enough medicine available. Side effects suck but as they say, they're manageable. Wait and see and keep some optimism.

Logged

ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

I totally agree with you.Now I decided to not answer directly to this provocation.

It IS a provocation, because otherwise, the moderateurs will have moderate already any abusive content making such comment useless.

Plus, the blog of Peter do mention research studies and this website is having a treatment news section among others.

I attribute such statement to something like "those guys [circle jerk of (badly) self-taught research "experts"] think they are making valuable comments .. tshh newbies ! you understand nothing and take too much place".

Personnally I asked some time ago to Peter (who has forwarded my request to Tim) to get my own thread, just to avoid bothering others with what interest me the most in HIV: the research made.And up to people to open or not this thread.

Again, I decided to not answer directly as we all have or up and down, meds side effects, and so on and so forth, and because we have to be forgiving.

Now, what the admin of this forum should care, is the stats.And I strongly believe that such comment is not a good for the popularity of this web site.

It might make new comer afraid to express themselves as they might be just afraid to get such comments back. And it might make some regular comers to be willing to come less often. But again, diversity (culture, background, opinions, etc..) IS an asset, and if it is the cause of more debate, then this website have reach his goal: attract the maximum of us to talk about HIV.

It finally make people want to look to others place.

Now, no needs to reply me: if you feel so do it. I will do it when I will feel that nothing can be changed.But I guess, Peter and all the moderating team (I personnally highly appreciate some of them) are also an asset to the poz communities, and they have greatly contribute to make us feel better just by allowing us to share our fear, joy or whatever and giving usually great and supportive feedback.Thanks in particular to Andy Velez, David Evans but also all the others, despite they might be more moody.

I also think that if I was owning such website, I could have also potentially become upset by those who are taking too much place in this forum (excepting if they are really good and speak always nice), maybe because it make others to speak less, or just because it's human to be upset by those who tend to raise their voice too often. But it IS a forum.

So in conclusion, I will remain neutral on the comment of Peter.He is human, and probably, Peter is still a very nice man anyway, that have gone thru many things (but as many others..).

As Veritas did in an earlier post, I urge proud40, who started this thread, to check out the Research Forum and see what he thinks. I guess he can make up his own mind whether its contents provide any good news on HIV/AIDS research or not.

For the record, I'm a big fan of Peter Staley's. He is a longtime survivor who for many years has done a great deal of amazing work that has helped huge numbers of us with HIV/AIDS, not to mention what he's done to help curb the dangers of meth use. He's always put himself out there bravely and intelligently and, as a gay man, I'm proud of having someone of his passions and abilities out there in the trenches fighting tirelessly for this cause. He's also a great asset to these Forums, no question. I guess maybe it's because of all of this that reading his words on this issue came as such a surprise. If someone else had said it, it would not have meant as much.

John's thread on the Research Forum currently has over 31,000 hits! And other threads there are also extremely popular (Veritas especially and others). That clearly shows that the Research Forum emphatically is not "one big circle jerk of (badly) self-taught research 'experts' for their list of future cures," despite what Peter said.

I don't think those of us who check out that Forum and occasionally post something on it are under some delusion that any new thing that comes along will save us all with one magic pill or injection that has no side effects and will be available next week! Please give us a little credit. What I personally like most about the Research Forum is simply sharing with others that at least some work is being done somewhere and to be able to evaluate it as laymen and laywomen (no one that I know of claims to be a scientist). It's just nice to see that research on HIV/AIDS is still at least moving forward at whatever speed and the Research Forum is a great place to be able to just share information on that, nothing more, nothing less.

Inchlingblue, with all due respect, your short tenure on aidsmeds doesn't really allow you the proper perspective of how some posters in Research have driven out other posters over the past several years, people of much wiser experience than what is represented on there right now. Perhaps someone like Peter Staley has more of that context.

And by the way, the amount of hits on someone's thread (which is really just a self-proclaimed blog and an argument could easily be made that if someone wants their own blog that's what blogspot.com, etc. are for, not the aidsmeds forums) is not indicative of anything in terms of quality of information or the vetting thereof. It's odd that you're making that argument.

And by the way, the amount of hits on someone's thread (which is really just a self-proclaimed blog and an argument could easily be made that if someone wants their own blog that's what blogspot.com, etc. are for, not the aidsmeds forums) is not indicative of anything in terms of quality of information or the vetting thereof. It's odd that you're making that argument.

As long as it is just a compilation of research, with a link to the trustable sources, this is just blabla.

Now do you consider the number of someone's post in the same way ?I mean: something that is really just a self-proclaimed blog and an argument could easily be made that if someone wants their own blog that's what blogspot.com, etc. are for, not the aidsmeds forums and that is not indicative of anything in terms of quality of information or the vetting thereof ?

You may see such research thread as a blog. In the bottom of my heart, it is not. And I have a blog as well as a webserver. The research thread is only a compilation of reasearch and news that could maybe be helpful or interest those who open it, no more.

And by the way, the amount of hits on someone's thread (which is really just a self-proclaimed blog and an argument could easily be made that if someone wants their own blog that's what blogspot.com, etc. are for, not the aidsmeds forums) is not indicative of anything in terms of quality of information or the vetting thereof. It's odd that you're making that argument.

All I'm saying is that it's indicative that there is interest in following the information on the particular thread. Regardless of whether the hits are "unique" hits or repeats, there are a certain number of people (a significant number) that are interested in the contents.

You're right, I have not been on here long enough to know what went on before I was here, so I'm only speaking of my perception from the time I joined.

The thing is, Miss P (and I love your posts overall, by the way, not just saying that, I mean it), as I said above, there are kinder more diplomatic ways of saying what Peter said. It's not so much what he said as how he said it.

So in conclusion, I will remain neutral on the comment of Peter.He is human, and probably, Peter is still a very nice man anyway, that have gone thru many things (but as many others..).

NEUTRAL??!!?? You might want to pull out a dictionary and read up on that word.

Look, you (just like Peter) have a right to express your opinions. Unlike Peter, who did NOT mention a single forum member, you have called out most of the moderators (no, you didn't mention all their names, simply the ones you don't find "moody"). However -- to say you are neutral here and is simply laughable.

Inchlingblue, with all due respect, your short tenure on aidsmeds doesn't really allow you the proper perspective of how some posters in Research have driven out other posters over the past several years, people of much wiser experience than what is represented on there right now.

Personnally, I would really appreciate to get more details on that.Until then, these arguments have no others values than to pretend

NEUTRAL??!!?? You might want to pull out a dictionary and read up on that word.

Look, you (just like Peter) have a right to express your opinions. Unlike Peter, who did NOT mention a single forum member, you have called out most of the moderators (no, you didn't mention all their names, simply the ones you don't find "moody"). However -- to say you are neutral here and is simply laughable.

All I'm saying is that it's indicative that there is interest in following the information on the particular thread. Regardless of whether the hits are "unique" hits or repeats, there are a certain number of people (a significant number) that are interested in the contents.

Comedies are often highly-viewed, yet they are still comedies and not indicative of reality.

Now -- I don't disagree that the research forum serves a good purpose, however, some fo the problems with it are:

1. A number of posters presenting things as the "next big thing"2. Posters making improper interpretations of studies3. Posters unwilling to hear "another side"4. Posters carpet bombing with anything and everything they find -- regardless of source (not everything prestented as a "study" should be considered science).

Perhaps this is what Peter was getting at......... If any individual was seeing themselves in Peter's post -- perhaps they should ask themselves, Why?

Comedies are often highly-viewed, yet they are still comedies and not indicative of reality.

Now -- I don't disagree that the research forum serves a good purpose, however, some fo the problems with it are:

1. A number of posters presenting things as the "next big thing"2. Posters making improper interpretations of studies3. Posters unwilling to hear "another side"4. Posters carpet bombing with anything and everything they find -- regardless of source (not everything prestented as a "study" should be considered science).

Perhaps this is what Peter was getting at......... If any individual was seeing themselves in Peter's post -- perhaps they should ask themselves, Why?

Mike

I think you made some valid comments.But come on, what you are saying is truth for all the forum in the world.If you want that only people with the right background to express themselves, then the research forum must be read only, and the writting right limited to those who have demonstrated their background.

This is a MODERATED PUBLIC forum, not an EXPERT forum. So let's the moderator act when it is need and not afterwards in an other thread.

The thing is, Miss P (and I love your posts overall, by the way, not just saying that, I mean it), as I said above, there are kinder more diplomatic ways of saying what Peter said. It's not so much what he said as how he said it.

Context again. It's VERY unusual that Peter would use such language, or any moderator here -- they have to be pushed to extreme. I guess even our team of moderators have their (all to human) limits. The funny thing is that I think all of them have at one time or another reached their limit with this certain one poster who never seems to listen to what anyone else says. Personally I've tried to just stop talking to him, but I really shouldn't have to do that.

As an aside, though a bit on topic, I find if you really want to see real time HIV/AIDS treatment information that the use of RSS feeds and a news aggregator application (most are free) solves most needs. Simultaneous, but separate, use of a web browser and a news aggregator allows for a higher digestion of information. Though I'd also argue that it's very, very easy to overdose on such things when one is newly diagnosed -- it's about balance and obviously that varies from one person to another.

Jesus H. Christ grow a pair ladies. The Research forum has become a circle jerk of OCD behavior and everyone around here knows it. It's about time someone called it out. The passive aggressive pablum posing as a response seals the deal.

Since I post periodically in the Research forum, I assume that I unfortunately fall under the heading of an obsessive compulsive circle jerker. Oh well. I'm wondering though, really I am, what that particular forum would look like in a perfect world (at least as defined by Miss Philicia . If it sounds reasonable I'll do my best to adhere.

freewillie99, please point out my post where I made this asserted definition of a perfect world -- thanks.

And by the way, while you're busy singling me out by name I'd like to take the opportunity to welcome you to the world of AIDSmeds forums outside of the Research section -- I see it's your first venture outside those confines during the past 8 months since registering on the forums. Bravo.

And by the way, while you're busy singling me out by name I'd like to take the opportunity to welcome you to the world of AIDSmeds forums outside of the Research section -- I see it's your first venture outside those confines during the past 8 months since registering on the forums. Bravo.

Obviously snarkiness comes more naturally to you than providing solutions. Typical. As for this being my first foray out of the Research forum, wrong again. Lame assertions masquerading as "facts" aren't very constructive. Next.

Obviously snarkiness comes more naturally to you than providing solutions. Typical. As for this being my first foray out of the Research forum, wrong again. Lame assertions masquerading as "facts" aren't very constructive. Next.

No, basically I asked you to show me a link and you failed miserably at the request. Typical, I guess.

No, basically I asked you to show me a link and you failed miserably at the request. Typical, I guess.

A link to what specifically? You bitch and moan about people being OCD and when I ask what the forum would look like in a perfect world as defined by you, you can't or won't answer. That's a classic case of someone who has far more interest in bitching and moaning than improving the situation. Whatever. Make another one of your patented snarky comments. I can't be bothered.

A link to what specifically? You bitch and moan about people being OCD and when I ask what the forum would look like in a perfect world as defined by you, you can't or won't answer. That's a classic case of someone who has far more interest in bitching and moaning than improving the situation. Whatever. Make another one of your patented snarky comments. I can't be bothered.

Experimental Autoimmune Pacemaker.Neurosurgeon discovered the link between the Vagus Nerve in the brain and the immune response at Feinstein institute of Medical research.Use would be for any autoimmune diseases.

Guys.I never meant to stir up some sort of hostile environment here. I just wanted to share the way I feel about living with HIV nowadays. My perception is that the balance between the good and the bad news regarding this phenomenon, is obviously always leaning towards the negative side. I sure appreciate and fully embrace all the advances being made on meds, therapies, social outreach, the media, etc., but it seems like we have fallen into that frequent trap that deals with the ability of the system to assimilate a problem and turn it into something so common, that it even teaches us on how to live with it instead on how to keep on fighting it back. Humanity has sat down and accepted the "only" possibilities of survival to HIV (meds) as a familiar new neighbor in our community; but it is severely failing to have a real perspective of the true abominable nature of these venoms, that little by little, seriously deteriorate our organisms. Yes, we have been trapped and this so real. Is this the best we can do?, just sit here and wait for them to bomb us with all that bullshit about learning how to live with HIV and do nothing about it?. From my point of view, apathy is a bigger pandemic than HIV itself.

HIV/AIDS shouldn't become part of our lives. It is not meant to be living along human life, nor we should wait for it to transform into a compatible virus. We need to fight it out, cast it out, expell it from our world, forever. Fight back.

Guys.I never meant to stir up some sort of hostile environment here. I just wanted to share the way I feel about living with HIV nowadays. My perception is that the balance between the good and the bad news regarding this phenomenon, is obviously always leaning towards the negative side.

I sure appreciate and fully embrace all the advances being made on meds, therapies, social outreach, the media, etc., but it seems like we have fallen into that frequent trap that deals with the ability of the system to assimilate a problem and turn it into something so common, that it even teaches us on how to live with it instead on how to keep on fighting it back.

You are back pedalling. You make a good point about it being a challenge to society - Larry Kramer makes this point very well in recent years - don't settle for more or less toxic treatment! But just in the last two years the Health professionals have been making a reconcerted effort to focus "humanity" (your too general term) and specifically research and funding and policy to give some attention to the belief that life-long treatment for the HIV infected around the globe may not be tenable - can't be garanteed, continued, etc.... This is good news. That people are asking the right questions. And I don't think anybody really stopped asking that question.

Humanity has sat down and accepted the "only" possibilities of survival to HIV (meds) as a familiar new neighbor in our community; but it is severely failing to have a real perspective of the true abominable nature of these venoms, that little by little, seriously deteriorate our organisms. Yes, we have been trapped and this so real. Is this the best we can do?, just sit here and wait for them to bomb us with all that bullshit about learning how to live with HIV and do nothing about it?. From my point of view, apathy is a bigger pandemic than HIV itself.

So join the people actively fighting for a cure and ever better treatments. But don' throw the good news baby out with the bathwater! "Living" with HIV is already a lot of progress!

How many diseases are there out there, this complex, that have had equal treatment success so quickly? Some people consider HAART to be a MAJOR science and health achievement of recent decades.

Geez

Logged

ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Living with HIV is only part of the strategy that has been orchestrated and sold to society, as an ideal situation and approach towards the HIV/AIDS problem; as it has been living with cancer, living with diabetes, living with high blood pressure, living with multiple sclerosis, etcetera, with the only "minor" disadvantage of the stigma shadow, casting over the ones infected with the HIV, especially homosexuals, prostitutes and drug users. Like if this illness had been designed to attack a population of individuals who threaten to move and shake the most "solid" support columns of society up until now.For me, "living"with HIV hasn't been a great advance; on the contrary, it has been a great stratagem in the form of a huge pacifier that has functioned well in order to help humanity assimilate this long term pandemic of HIV/AIDS, and stop making such a fuss about it. In other words, to stop fighting, to stop "THINKING" about it and about many other things that pertain to it.This ordeal is not about asking questions, they have already been asked; it is about making decisions and taking choices and understanding the reasons to do so.Society falls into the trap, bites the bait, not when it stops asking questions, but when it starts accepting what others offer as the truth, and stops taking action.

Well, that was a humdinger of an uproar and I personally laughed that Peter said that, then I scrolled down.

Anyway, proud40, I think there is a lot of positive information, but I know what you're saying. I personally, like others have stated also, am just so grateful to have this happen to me during a time when we have the meds and information we do have. Seeing people's CD4's go up, VL's go down after meds, when before there was nothing but a hug a Dr could do.... fantastic.

I also believe it was Germany (?) that had that case, where the leukemia pt is showing no signs of HIV, post bone marrow transplant which is just amazing, and I'm sure great things are going to come down the pike from that.

There was also recently a study a colleague showed me (and I'll try to find the link), where they found certain people in Africa seemed immune (probably incorrect term someone will blast me for) to HIV, and they're trying to figure out what in their cells are different. If I recall, it was like a mucus or secretion fo some sort from their genital area killed the virus. I could be misquoting, but that's the gist.

Keep your head up Proud and you're absolutely right though, we need to focus on positive... since we're positive. haha, ok dumb joke.

Good news? How about the pope declaring that condom use makes the spread of AIDS worse?

Why is that good news?

Well, it should give you hope that everyone you've ever met in your entire life is smarter than the pope. Kinda cool....

Seriously, a great way to live your life is one day at a time. Appreciate the here and now. Even though we all voted for hope a few months ago; it's not a way to live your life. There are so many excellent things in the world that hoping there might be some miracle news on the horizon seems like a waste of the good stuff. We cannot control the past or the future. We can only control how we feel about it. The cure might never come. If it does, terrific. But if not, who wants to spend time wishing upon a star.

I'm not telling you not to do research or not to fight for what is right, or that you can't wish for something terrific to happen. I just think that it's good to focus on what you can control.

Logged

Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Thanks jampdx and dtwpuck for your positive input, in the energy sense of the word, of course My Doc gave me the results today:01/15/09 cd4=239 vL=4803/30/09 cd4=216 vL=60.Nothing exhilarating about this. My Doc says it may be just a "flip" of the meds and the cd4's and the virus trying to gain terrain; but then again, if she sees this behavior persisting in three months, she may want to consider changing meds, from Kaletra-Truvada, to Sustiva and not sure yet. Since my actual meds may not be working. Started on Kaletra-Truvada on April/2008. back then my cd4=48 and viral load 1.654,900, went into full blown AIDS catching a pneumonia and a striking diarrhea. Doc says in my case, it is very probable that I may never go up into the 400 cd4s again, since I started off too low. Probably as much as 350 cd4.Well, bad news seem to be falling from the tree like apples on a Newton's head.Anyway. I guess I'll just have to take your word on it guys. Look at the positive side of things, focus on things I can control. Hhhhmmm, I'll see what I can do about it.